Patient involvement in the encounter between general practice and patients with a chronic disease. Results of a scoping review focusing on type 2 diabetes and obstructive pulmonary disease

Abstract Introduction Research has shown improved health outcomes when patients are involved in managing their health conditions and when their individual needs are considered. Objectives This scoping review aimed to map the existing research regarding chronic disease patients’ involvement in their encounters with general practice, with a specific focus on patients with Type 2 diabetes (TD2) or chronic obstructive pulmonary disease (COPD) and from the perspectives of both general practitioners and patients. Methods Studies of any design, date, and language were included. A systematic search was conducted using the following databases: Medline, CINAHL, PsycInfo, Scopus, and EMBASE from August until October 2020 and renewed September 2021. Data were systematically charted by the following study characteristics: bibliographic aims; study aims; setting; area of interest; results; conclusion. Results Eighteen studies were included; they conducted qualitative methods, surveys or mixed methods. From the patients’ perspectives, the importance of being more involved in treatment discussions during consultations as well as a friendly environment, was underscored. A good relationship and relational continuity make it easier for patients to be more involved in treatment decisions. From the general practitioner (GP) perspectives, they mentioned their high workload, long-standing relationships, knowledge about the patients and prepared patients as factors influencing their ability to involve patients in treatment discussions. Conclusion A good GP–patient relationship was considered an important aspect to providing and facilitating for involvement of patients with COPD or TD2. Scoping review registration: https://osf.io/ynqt2


Introduction
Globally, there is an increasing interest in patient involvement in healthcare [1,2]. Multiple definitions of patient involvement exist and among those a definition by the British Medical Association: 'the active participation of citizens, users and careers and their representatives in the development of health care services and as partners in their own health care' [3]. Research demonstrates improved health outcomes when patients are involved in the management of their own health conditions and when their individual needs are taken into account [4]. Furthermore, the positive influence of patient involvement to treatment and well-being has been established in terms of increased satisfaction [5], higher compliance [6], patient safety [5,7], enhanced psychological well-being [8], improved clinical outcomes and reduced healthcare-system costs [6,9,10]. Moreover, involving patients in treatment decisions benefits healthcare professionals by enhancing their understanding of patients' health problems, thus contributing to effective management of health delivery by gaining patients' trust and by enabling them to deliver individualised and tailored healthcare [11].
Worldwide, the number of people living with chronic diseases is rising, and the burden of chronic diseases is increasing rapidly. Globally, approximately one in three adults suffer from one or more chronic diseases [12]. Chronically ill patients tend to have complex pathways characterised by multimorbidity and multiple contacts across the healthcare system. To meet this complexity, general practitioners (GPs) are increasingly given the primary treatment responsibility for patients with chronic disease [13]. Being gatekeepers and the primary contact to healthcare, GPs play an important role in chronically ill patients' perception of being involved in their treatment and care. However, analyses of chronic diseases patients' involvement in their encounters with general practice appear to be lacking. We chose to focus on chronic obstructive pulmonary disease (COPD) and type 2 diabetes (TD2) as they are the two most prevalent chronic conditions that are managed by GPs in Western countries [14,15]. In a situation where policymakers continue to push for the adoption of patient involvement in general practice of patients with COPD and TD2 [13], there is an urgent need to remedy the lack of knowledge in this field. This scoping review aimed to map the existing research regarding chronic disease patients' involvement during their encounters with general practice, with a specific focus on patients with TD2 or obstructive pulmonary disease and from the perspectives of both general practitioners and patients.

Protocol and registration
This scoping review is reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (Prisma-ScR) [16]. The protocol was registered in the Open Science Framework (osf.io/ynqt2) and remained unchanged during the review.

Eligibility criteria
Studies reporting the involvement of adult patients aged 18 years or older and with TD2 or COPD were included. The core concept examined by this scoping review is patient involvement, defined as active participation in healthcare decision-making, patient involvement in healthcare consultation, factors associated with patient involvement and patients' preference for involvement. The context is limited to general practice and their encounters with GPs. Studies reporting on patients with mental illness, patients in palliative care, and studies reporting results from multiple diagnoses, populations or age groups and where the results were not stratified were excluded. Studies reporting patient involvement with other healthcare professionals in general practice were excluded. If studies included patients with different diagnoses, patients both over and under 18 years of age, the studies were considered for inclusion only if data was stratified. Similarly, if studies included both a patient perspective and the perspectives of GPs or other healthcare professionals, the studies were included only if the patients and GPs perspectives were presented separately. Literature of any date and language was included.

Information sources and search strategy
Both systematic and explorative literature searches were used to uncover the field of research in the best possible manner. A systematic search was conducted using the following databases: Medline, CINAHL, PsycInfo, Scopus and EMBASE. All databases were searched from August 2020 until October 2020. The search was renewed on 10 September 2021.
The search was performed by the first author and guided by an information specialist. Validated and pretested search filters were used as inspiration for developing our matrix [17,18]. The search strategy included subject indexing terms and free-text terms for title, abstract, and keyword searching. The search terms were grouped into three concepts and arranged per the PCC (population, concept, context) framework as recommended for scoping reviews (Table 1) [19]. The full version of the search is documented as supplementary material. No restrictions were placed in terms of publication year or country. Simultaneously, an explorative chain search was conducted using reference and citation analyses of the publications identified by the systematic search. In addition, reference lists of included studies were screened for relevant articles, and experts' literature and libraries were also screened.

Study selection
All identified studies were uploaded to Endnote (https://endnote.com/). Doublets were removed prior to importation to the reference programme Covidence.org.
Before study selection, the predefined eligibility criteria were pilot-tested in a sample of 50 articles (SBT, MM, and BN). Two authors (SBT and BN) independently screened the remaining titles and abstracts, and disagreements were resolved through discussion or via the involvement of a third author (MM). Eligibility does not necessarily have to be established before the literature search in a scoping review; eligibility criteria can be developed as the knowledge of the identified literature grows [20]; accordingly, the eligibility criteria for this scoping review were adjusted after screening the titles.

Data extraction
Two reviewers (SBT, BN) performed data extraction independently using predefined data-extraction spreadsheets. Discrepancies were negotiated until consensus was reached, with a third reviewer (MM) available to resolve conflicts. Data were systematically charted by the following study characteristics: Bibliographic aims; study aims; setting; area of interest; results; conclusion.

Data synthesis
The included studies' key findings were descriptively summarised and narratively presented. A textual narrative synthesis was applied as described by Lucas et al. This approach comprises a commentary reporting of study characteristics, context, quality, and findings based on differences and similarities among studies [21]. Thus, the extracted studies were first grouped by the perspectives reported (i.e. perspectives of general practitioners and patients with TD2 or COPD). Afterwards, patterns across the studies were identified and presented descriptively and narratively.

Study selection
We identified a total of 12,717 studies. After de-duplication, 7764 title abstracts were screened, and 7708 citations were excluded due to wrong outcomes or wrong population, leaving 56 studies for full-text reading, of which 18 studies met the inclusion criteria. The process is illustrated in Figure 1.

Narrative synthesis
Patients' perspectives. Patients reported the importance of GPs providing them with sufficient time for consultations and explaining or discussing things with them. It was essential that the GPs were not too rushed and preoccupied with their own agendas under time-pressure constraints [22,23,28,33,34]. The lack of time to deal effectively with patients' concerns and the beliefs among the patients were repeatedly mentioned [34]. Similarly, the patients stated that an unfriendly environment with poor attention and lack of eye contact with the GP prevented them from asking questions and expressing their concerns during consultations and made the encounters more doctorcentred [29]. The relational continuity of care was important to the patients, who preferred to see the same GP at each consultation. The patients expressed that they would benefit from the continuity in terms of increased familiarity with their circumstances [23,29,33,34]. In addition, the patients considered it problematic if they did not see the same GP every time because seeing the same GP would make it easier for them to discuss their problems and be more  involved in treatment decisions [33]. The patients experienced that GPs differ in behaviour and methods of providing care and information, and the patients preferred to build a relationship with their GP to increase their ability to be more active in treatment decision-making [29]. This relationship was considered a partnership defined as when the competence of the GPs and the patients' knowledge complemented each other [23,28,31,34,38]. The patients wanted to cooperate with their GP but found it highly difficult if their needs were not listened to [31]. Furthermore, patients reported that their GPs paid too little attention to their health beliefs and the opinions and concepts they held on medicine in general, their illness, and medicine-taking [38]. Patients identified key factors associated with more adequate discussion of their visit's priorities, including GPs' willingness to be flexible in the flow of discussion topics and the extent to which their GPs listened to their concerns [28]. It was evident that an active patient/provider alliance was important for engaging the patients in the work of disease management but likely also a critical factor in sustaining the long-term collective work that diabetes management requires [23]. Low literacy was mentioned as a barrier to being involved in treatment decisions because the patients believed that they had to accept what has been demonstrated to them [29]. However, identifying visits' priorities in advance enhanced a proactive and collaborative approach, made it possible for the patients to bring what they wanted to discuss, and did not prevent the GPs from talking about what they wanted to express. Thus, a personalised approach offered by GPs was valued and the patients expressed a wish that the GPs should be better at listening in a more holistic approach [23,31].
General practitioners' perspectives. GPs mentioned high workload as a major problem affecting their interactions with the patients because building good relationships with patients takes time [25,30]. GPs expressed the negative impact of time constraints on the ideal goal of entirely electing patient priorities; being in a rush, they often had their own agenda overriding the patient's agendas [28]. A good relationship with patients was considered necessary in relation to involving them in treatment decisions [25,30,32,36,37]. The GPs' knowledge about their patients appeared to be important in assessing whether they could rely on the patient's own judgement about the necessity for treatment and hospitalisation. They believed the patients were good at assessing their needs themselves [32]. Some GPs suggested that there should be a personal interest of healthcare providers in care and to show interest to the patients. Furthermore, they proposed avoiding giving instructions to the patients but, rather, having good communication and respecting their concerns; such an approach would be a more helpful way to correct the patients' understanding of their disease and gain their cooperation [30]. The GPs indicated that they favoured active involvement of the patient's experiential knowledge due to having lived with the disease not necessarily reflecting a biomedical need but also the requirement for relieving anxiety and meeting challenges in the patients' social lives [32,35]. Consequently, there could be discrepancies between the GPs' and patients' judgments, which the GPs had to balance. According to the GPs, a lack of patients' consent to treatment or hospital referral seemed particularly challenging [32]. GPs noted that a tool to empower patients to help them formulate their top priorities at consultations would be helpful, and the GPs liked the idea of previsit preparation [28]. The GPs acknowledged that there should be potential for flexibility in the application of guidelines and that involving patients in decision-making was an important consideration in delivering high-quality care. However, they believed that it was more caring to insist upon treating a patient's disease than to respect any patient preference and that they should endeavour to persuade patients to accept their advice. The GPs saw their primary responsibility as doing whatever was necessary to minimise the possibility of achieving less-than-ideal outcomes. GPs often experienced a conflict between the two professional responsibilities of achieving ideal health outcomes for their patients and respecting their patients' rights to make decisions where compromise is often necessary [32].

Main findings
Across studies and perspectives, our findings indicate that time at consultation, relational continuity, and a good GP-patient relationship are important for providing and facilitating patient involvement. These findings align with research showing that continuity in care, a supportive consultation environment with a warm and caring GP, and a good patient-GP interaction is significant in chronic disease management [14,37].

Patients' perspectives
For the patients, their GP must pay attention to their health beliefs, opinions and concepts they hold about their treatments, illnesses, and medicines, corroborating findings from Kennedy et al. who found that healthcare providers' understanding of their patients' healthcare beliefs, values, and preferences is considered important by both patients and healthcare providers. If these providers listen and communicate with patients, they are more likely to develop a shared understanding that may improve future decision-making [40]. This approach is also supported by McMillan [41], who found that the patients' beliefs and opinions regarding their disease and treatment affect their self-management. Exploring patients' beliefs and values is crucial to understanding how to provide patient-centred care.

GPs' perspectives
However, in some of the included studies, the interviewed GPs experienced conflicts between their professional responsibilities of achieving what they consider ideal health outcomes for their patients and respecting their patients' health beliefs and their rights to be involved in decisions. Abu Hassan et al. found that exploring patients' concerns and beliefs to treatment is crucial to assist physicians in delivering patient-centred care because negative concerns and beliefs towards treatments or decisions made by the physician might cause barriers to accepting the treatment [42]. Thus, patients' knowledge and health beliefs and GPs personal knowledge about a specific patient should be acknowledged as a conceptual resource for patient involvement, but how the GPs should balance their own and patients' preferences should be explored further. However, these aspects apply mainly to patients with TD2 and their GPs because no studies were found reporting on patients with COPD. Only two studies reported on GPs' perspectives on the involvement of patients with COPD. This literature gap is of concern, given the association between stigma-related experiences and essential patient outcomes and the fact that there are many unmet healthcare needs among patients with COPD [43]. Furthermore, research shows that many people with lung disease have faced stigma due to their condition and research lacks awareness of this aspect [44]. Furthermore, patients with lung disease tend to feel isolated, which makes it even more important to engage patients with COPD to be more involved in treatment decisions [45]. Thus, the included studies indicate that focus and action must be directed towards research exploring patients with COPD perspectives on patient involvement in general practice.

Strengths and limitations
This study was designed and reported in line with the recommendations of the PRISMA-ScR statement [16]. Multiple databases were searched, and a thorough search strategy was designed iteratively by the research team and an information specialist to account for the three different dimensions of the search (patients with TD2 or COPD, patients' involvement, and general practice). All aspects of data collection, extraction, and analysis were carried out independently by two researchers, with a third party available for mediation in cases of disagreements. The primary limitation of this scoping review is the sparse literature related to our objectives that may be caused by choice to focus on chronic obstructive pulmonary disease (COPD) and type 2 diabetes (TD2) as they are the two most prevalent chronic conditions that are managed by GPs in Western countries [14,15,[46][47][48]. On the other hand, no results were found to suggest that the perspectives of patients with COPD and type 2 diabetes regarding involvement should differ considerably from those of patients suffering from other chronic conditions. The quality of the included studies was not assessed because this is not typically a part of a scoping review due to an effort to maintain a broad perspective and include studies with different methods and designs.

Conclusion
A good GP-patient relationship was considered an important aspect in relation to providing and facilitating for involvement of patients with COPD or TD2. Furthermore, conflicts between GPs' professional responsibility of achieving the best health outcome for their patients and respecting patients' health beliefs are relevant factors in patient involvement. The lack of studies investigating patient involvement in general practice of patients with COPD or TD2 may suggest the need for further research. Our findings indicate that the need for future research is vital for patients with COPD.

Disclosure statement
No potential conflict of interest was reported by the author(s).